As normal, I attended my consultant's appointment and was again told that my previous blood tests had not identified any paraprotein. I was advised that I would be subject to a further bone marrow biopsy in the near future. This will be my 15th such procedure!
The other day I attended the BHOC for my monthly immunoglobulin infusion which went without any difficulties.
Since my last post, my consultant asked if I would consider being nominated as a "Patient Expert" in an appraisal by NICE (National Institute for Health and Care Excellence) of what I have come to know as CAR-T cell treatment.
This I willingly agreed to and I was duly contacted by Myeloma UK who would nominate me. After a series of Zoom meetings with both Myeloma UK and NICE everything was set for the appraisal meeting. I had been asked to prepare a number of documents, the most significant being my Patient Expert Statement which had to be written in accordance with a template. Sadly I was contacted by NICE just 4 days before the scheduled meeting to say it was cancelled; the company (Janssens) having withdrawn. This was deeply disappointing not because of the effort I'd made in preparation but more because I wanted to explain, as a patient, just how significant the treatment is. It is now 15 months since I was infused with my CAR-T cells. Since then my quality of life has improved immeasurably. Having previously relapsed three times I was running out of treatment options. CAR-T cell treatment has undoubtedly lengthened my life.
One extra piece of news. Over the last ten days, I have been re-decorating a bedroom. Our home was built in 1958 and the room had not been fitted with coving. A previous owner had installed some but it was very small and of poor quality. Its replacement took five days. The walls needed emulsion paint and I chose a one coat solution which went on in one day, without a mess and to an excellent finish. Then came application of eggshell paint on skirtings, door and wardrobes. This took longer than expected as the wardrobe doors are very fiddly louvres. The work is finished now and although very hard work, it at least demonstrated my continuing physical abilities. More projects to follow!
Every project has challenges, and every project has its rewards
Stephen Schwartz
Keep safe, keep well
Stephen
